Written by Christina Jensen on May 20, 2019
The Platelet Disorder Support Association (PDSA) is dedicated to enhancing the lives of people with Immune Thrombocytopenia (ITP) and other platelet disorders through education, advocacy, research and support. ITP is an autoimmune bleeding disorder and affects children and adults. Patients with ITP face a complex set of physical… Read More
Written by Christina Jensen on March 12, 2019
Washington, DC, March 12, 2019—The National Organization for Rare Disorders (NORD) today announced the individuals, organizations and industry innovators who will be honored for their outstanding work in support of the rare disease community at this year’s Rare Impact Awards on June 22.
Written by Christina Jensen on May 1, 2018
Have you heard of a patient or natural history registry but have no idea what it was? Interested in starting a registry for your patient population but not sure where to start?
We will cover these topics and more in an educational webinar on May 1. NORD’s Research Programs Manager, Suzanne… Read More
Written by Jennifer Huron on April 19, 2016
Twenty rare disease patient groups have been chosen to develop natural history studies with the assistance of the National Organization for Rare Disorders (NORD) supported in part by a cooperative agreement with the U.S. Food and… Read More